Understanding The Lived Experience Of Caregivers Of Patients With Dementia And Healthcare Reform In An Essay.

What is Lived Experience

Discuss about the Healthcare Reform in Canada for Dementia.

An understanding of the “lived experience” of “caregivers” of patients with dementia requires a psychological profile of the caregivers after a substantial amount of time has been spent caring for patients with a devastative terminal illness that is dementia. A conjunction of understanding; as it concerns the nature of dementia and its effects and imprints on the human condition as well as the parameters of knowledge that is required of the caregivers need to be examined to be effectively establish this discourse. It is important to understand that often Alzheimer’s disease is a pre-cursor to dementia and possibly is the causative factor in about 60- 70% of dementia cases; Dementia leads to loss of cognitive functions and deteriorates the ability of the individual to perform mundane and normative human tasks while the symptoms of memory loss continue to become worse over time (World Health Organization, 2015; Alzheimer’s Association, 2016).

A definition of “Lived experience” for the purpose of this discourse can be termed as the day to day activities of nurses with their patients and how these interactions have indelible impacts on the lives for the nurses for the long run; and this is often explored using a phenomenological hermeneutic method (Fackler, Chambers & Bourbonniere, 2015; Lindseth & Norberg, 2004). The manner in which the current healthcare policies affecting the patient and also the caregiver’s and family must be prorated and amended because there are numerous shortcomings and this discourse will further explore these shortcomings The next step in this specific paradigm of Dementia and its effect on the Nurses and caregivers is to centralize the discussion from a broad spectrum or worldview and centre the discussion specifically around caregivers in North America and more specifically in Ontario, Canada. It has been reported in predictive fashion that the threat of dementia is imminent for the older section of the population; “the age standardized incidence of dementia in Canada has Running head: HEALTHCARE REFORM DEMENTIA been estimated at 21.8 per thousand for females and 19.1 per thousand for males” (Raina et al, 2004, p. 50). This prediction that the prevalence of dementia in the Western world will only continue to thrive is very important because it means that resources must be allocated and the stressful effects of caring for patients must eliminated or addressed with efficacy.

It is often difficult for patients with dementia to communicate in an effective manner whether through verbal means or non-verbal quirks and it can be difficult for the patients to understand the nurses as well (Soderlund, Cronqvist, Norberg, Ternestedt & Hasebo, 2015). The effects of caregiving are that it is very psychologically taxing and it takes a toll on the mental state and possibly the overall elasticity of the mind as this is put in perspective in scholarly views; “Objective aspects of dementia and/or patient-related variables are arguably not the only predictors of caregiver QOL, and the subjective experiences of caregivers could be strong predictive factors given that there is overwhelming evidence of negative psychological states associated with caregiving” ( Takai, Takahashi, Iwamitsu, Oishi & Miyoka, 2011). Deriving from the understanding of scholarship from varying sources cutting across the U.S., Canada and Japan is that effects of Dementia being the psychological effects associated with disease are more impactful on the health of the patient as well as the caregivers than any debilitating physical aspects that are resultant of ailment. The needs of patients with dementia are numerous and unending and therefore there is a need for patience and a resolve in dealing with such patients that is often draining and stressful for the nurses and as well the family of the patient.

Centralizing the Discussion on Caregivers in North America

The provision of services and care to patients with this terminal illness may have a lasting impact on physical, emotional and psychological health of the caregiver; statistical information in form of survey shows that 35% out of a sample of 221 caregivers reported some Running head: HEALTHCARE REFORM DEMENTIA form of deterioration to their health as a direct result of caring for a patient with dementia and this was further accented if the caregiver was living in with the patient (Thompson & Roger, 2013, p. 224). It is important to understand the pervasive nature of a carrier with an illness displacing their psychological turmoil and how this can begin to unspool and encroach on the mental elasticity of the caregivers and family members. Medical Implications of Dementia and field experience of caregivers The main medical implications of Dementia affect the ability of the patient to effectively remember simple tasks and the impairment of cognitive abilities as well as a distortive understanding of the passing of time; while the primary responsibility of caregivers is being an agent of helping the patient to achieve independence and the highest levels of functionality as it regards the physical, intellectual and spiritual wellbeing of the patient (Hynninen, Saarnio & Isola, 2014; Dimakopoulo, Sakka, Efthymiou & Karydaki, 2015).

An illnesses such as Alzheimer’s and dementia are very difficult and costly to treat because they are terminal in nature therefore the usage of drugs to treat such ailments are understandable. There are several side effects as it concerns these drugs and it is necessary to understand that there are usually residual effects that result from the use these drugs. The side effects of these drugs range from many physical symptoms (nausea, diarrhea, cardiac arrhythmia) to mental effects such as psychosis. These drugs can be used but it necessary to minimize the side effects of such medications and also understand that current treatments of diseases such Alzheimer is costly and it affects about 24 million people worldwide. Individuals suffering from such ailments often need the help with everyday life and many cases of Dementia are and outshoot of a person that was suffering from Alzheimer’s. There are numerous challenges that are faced by the individuals that help people with these illnesses.

The Role of Reform and changing the narrative about mental illness Social Determinants play a role in the understanding of illnesses such as dementia and the manner in which a patient can be helped. Dementia and terminal illness is an excellent topic and case study for the manner in which treatments and advancement in bio-medicine; and the role that the government has in reviewing the laws about the usage of medicine and the impact on the medical support staff and health-care practitioners. These is the direction in which the healthcare reform should have specialized focus on individuals who need long term care because it is a sort of a silent epidemic. The focus of this particular discourse was to take a look at the needed reforms from the perspective of the patient and also the healthcare practitioners. The reason for this is that this allows for a broad understanding on the way in which healthcare and the needed reforms are conceptualized.

Challenges of Communicating with Dementia Patients

Mental illness rates for adults in ages of 70 and 89 extend to dementia but increases with age as reflected by Alzheimer Society of Canada, 2010. It has been observed that older adults are likely to live to chronic illness with comorbidities with mental illness. Canada Health Act (CHA) aims at promoting, protecting and restoring mental as well as well-being for residents of Canada (Gill, 2009). This facility is devised such that its residents can have access to health services with or without barriers arising from financial or any other sources. CHA influences a number of health programs with definitive criteria’s being public administration, universality, comprehensiveness, accessibility and portability of such services. Catering to mental health and long term conditions includes involvement of allied health professionals within community settings. Such services often needs to extend beyond Canada Health Act for providing viable coverage in provinces. In cases of  long-term conditions or dementia there is need for long-term residential care or home care, ambulatory services but such services are exempt from the program of the Canada Health Act (Cohen, 2007). Initial reforms in regards to such Act needs to be made such as to include all residential care, home care, ambulatory services. The Act needs to include all medical treatments that are deemed to be medically necessary such as to improvise and impact health of general population who are experiencing either of conditions or comorbidities.

Canada health services is primarily functioned by Federal funding. But such funding is deemed to be reduced by $36 billion and to include 50-50 cost sharing to 18-82 percent cost sharing. Such reduced contribution from Federal government can act as a deterrent to provide support and health care treatments to citizens facing conditions related to Dementia, long term disabilities. The Federal government with downloading responsibility to provinces there are rising fears that lists of medically insured services will be affected (Sibley, 2011). There needs to be brought amendments into being such that medically insured people are able to avail services related to conditions as discussed above. As the country is faced with problems from rising ageing population such consideration will help the government and its individuals plan a better way.

Though policies of Federal and provincial governments needed to include mental health policies and long term conditions for seniors, they have focused on children excluding seniors. Governments have rationalized that as major mental illness and long term conditions are faced in childhood ( approximately 70% cases) focus needs to be on them rather on seniors (Iwashyna, 2010). The society does not value those who are ageing and are faced with long-term conditions or dementia. Therefore, a major policy change in this regard will bring about fair and equitable distribution of funds as well as other resource allocation. Risks of social inequality has risen considerably due to accumulated disadvantage of such policy. Health reforms relative to equitable distribution of policy benefits needs to be extended to all. The policy with reduced focus on mental health and long term conditions has excluded a portion of a population along with lifespan (Rochon, 2008). This depicts lower interests of the government to bring changes and reforms in this segment of healthcare. Various seniors in government offices are of the view that dementia or Alzheimer’s diseases are no mental illness. Therefore, for generating greater awareness there needs to understanding related to dementia and Alzheimer’s regarding the way they are viewed. Funding in fields of mental health was provided till the age of 65 and concerned with grey area of psychogeriatric. Split between views for dementia and long term conditions involved management as it included neurology, geriatrics. Further various mental health community has regarded dementia as an unimportant issue, there are also division in regards to mental health teams and senior  teams (Witlox, 2010). For raising greater awareness and bringing about changes management teams and mental health teams needs to work in a coordinated and integrated manner. There needs to be integrated policy documents and service systems catering to dementia and long term conditions.

The Effects of Dementia on Caregivers

Long-term care analysis in Canada is misleading as the country has differential set of developmental history in each area territory or province. Long-term care reforms at a national level might pose to be a significant challenges as data gathering units themselves had been able to successfully collect data for limited number of provinces. Though Canada Institute for Health Information (CIHI) has aimed at standardization of information and health care facility pan-Canada. Health care reforms needs to aim at installation and upkeep of facilities catering to patients of dementia or long-term conditions on a national basis. Poor distribution of facilities and infrastructure amongst hindered functioning of such facilities for catering to increasing number of patients in the ageing population. Inequitable distribution of such facilities have led to comparing 5% residents under age of 65 can be compared to a grain of salt. 

Quebec has been omitted from various calculations and measurements that can depict its facilities being set up to cater to patients (Wahlbeck, 2011). The leading challenge that has deterred government or health care bodies in implementing reforms or setting up facilities or gathering data is lack of common language. There are a variety of language spoken across the country, which makes it difficult to apply similar norms or regulations or make any demonstrations. Heath care reforms needs to ascertain either English or French is spoken at facility centers. This will ensure steady communication amongst various professionals and also across departments.      

Health care systems across Canada needs to bring about changes in appropriation of costs paid for patients for long-term conditions or dementia. Costs that needs to paid by patient parties and government largely varies across various provinces and areas. In areas where there is provincial importance given to dementia or long term conditions patients health recorded are better and they get treatment. But in other provinces such cases are ignored grossly leading to differential access to health care facilities.

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Gill, S. S. (2009). Syncope and its consequences in patients with dementia receiving cholinesterase inhibitors: a population-based cohort study. Archives of Internal Medicine, 867-873.

Iwashyna, T. J. (2010). Long-term cognitive impairment and functional disability among survivors of severe sepsis. Jama, 1787-1794.

Rochon, P. A. (2008). Antipsychotic therapy and short-term serious events in older adults with dementia. Archives of Internal Medicine, 1090-1096.

Sibley, L. M. (2011). An evaluation of access to health care services along the rural-urban continuum in Canada. BMC health services research, 20.

Wahlbeck, K. W. (2011). Outcomes of Nordic mental health systems: life expectancy of patients with mental disorders. The British Journal of Psychiatry, 453-458.

Witlox, J. E. (2010). Delirium in elderly patients and the risk of postdischarge mortality, institutionalization, and dementia: a meta-analysis. Jama, 443-451.